CRMO awareness

Quick disclaimer. I don't really know where to put this thread in any of the forums so if one of the moderators could move it to the correct place, I would be extremely grateful.

I wanted to make a posting on the DIS about disease that most of you have probably never heard of. It is called Chronic Recurrent Multifocal Osteomyelitis (CRMO for short). CRMO is a rare condition that affects bones in the body. It is also classified as an autoinflammatory disease.

CRMO was originally thought to affect mainly children but there seems to be a lot of young adults (20s-30s) who have been diagnosed with it lately.

Onto my daughter's story. My three and a half year old daughter was experiencing back pain after a fall at the playground, after multiple trips to multiple doctors, a pediatric orthopediatric specialist sent us to get an MRI of her spine, as he thought she might have a stress fracture in her lumbar portion of her spine.

That MRI showed she had lesions in her spine some on her hips. Of course the first reaction was cancer. Thankfully the doctors quickly ruled this out. More bloodwork showed that she had elevated markers for inflammation. We continued to see a hematologist every 6-8 weeks for a routine checkup and bloodwork.

The continuous bloodwork kept showing inflammation so our hematologist ordered an second MRI which showed the same lesions. At some point, the hematologist suggested that it could be Langerhans Cell Histiocytosis (LCH for short). However, all of the biopsies that were taken showed negative for LCH. After more checkups and bloodwork, we were finally ordered to do a third MRI which again, showed the same lesions, and now they were becoming more pronounced in her neck region. This correlated to some neck pain that my daughter was experiencing.

At this point in the saga, our hematologist conferred with some infectious desiease specialists and finally reached a diagnosis for CRMO.

From what we are reading, CRMO is eventially diagnosed by excluding everything else (bacterial osteomyelitis, scarcoma, leukemia, lympohoma, LCH, etc.)

We were referred to a rheumatologist who put my daughter on an NSAID. I swear to you all that the day after my daughter took the medicine she was nearly back to her normal self. We continue to see the rheumatologist evey 2-3 months and repeat imaging a few times a year. We are very thankful that this is not a life-threatening disease, although the pain associated can be debilitating at times.

I wanted to tell my daughter's story to bring light of CRMO to the public. Children and adults who have pain that could be misdiagnosed. CRMO is classified as a rare disease with a reported incidence of 1 in 1 million. I fear that there a lots of people out there who have CRMO and don't know about it. Most general physicians/family doctors/even pediatricians don't known about this disease. Our own pediatrician didn't know about it until we explained it to her.

This disease has been known in the medical community for about 30 years or so. Since this is such a "new" disease, no long term studies have been done to see if kids will outgrow it. Unfortunately, there is no crystal ball to tell the future for this.

I implore any parents out there with children with unexplained bone/joint pain to talk to their doctors about CRMO. I just would like to bring some awareness to as many people as possible.

I would be happy to discuss this publicly here on the boards for those of you who want. Please pm me if you want to talk in private.

Thank you for sharing your story for others to learn about this rare condition. It sounds like your family has been through quite a bit, and I imagine that was scary for you as parents. I'm glad your daughter's pain is better controlled now and hope she is able to pursue her childhood with minimal interruption for medical needs.

Thanks for posting this as my DD likely has this as well. We are currently on our way to WDW so hopefully things go well. She is responding well to the steriods she was recently prescribed. She is also still on antibiotics in case it is actual osteomyletis. We did reserve an offsite wheelchair to help since she has only recently been without walking boot (and only part time).

Thank you very much for sharing this. I have a teen relative who has unexplained bone and joint pain. I'll ask his mother if she's heard of this disease.

Odd that your post was moved to this board. It seems like it would be better suited to the main Community Board, so you'd reach a broader audience of people who might benefit from awareness of this. But, anyway, thank you again and I'm happy your daughter is doing well.